Category Archives: cystic fibrosis

FEBRUARY 11–Do you have kids?

The Surprises

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I forgot that I had ordered, for Caitlin, these kitty slippers from LL Bean that were back-ordered for months and last night I got word they were shipped. To Pittsburgh.

Then I was rinsing dishes and realized that the candle from her last birthday cake was tucked into a little vase on the windowsill.

….💔….

Life is a minefield these days, but the biggest mine I’ve been waiting to step on has been ‘the question.’ For the past 7 weeks, I had been expecting it, but no one ever asked. Even while we were traveling and meeting strangers. Our last night in California, we were talking dogs with a woman–a real dog person–when I decided to bravely show a photo of Henry in Caitlin’s arms. Oh, is that your dog walker? she said.

😳  (Dog people apparently do think differently!)

The other day we drove up to Portland. Maine is important to us. We have a lot of family and close friends there, including Andrew. We fully expected that Caitlin would move there post-transplant. The week before she was listed in April 2014, our last ‘getaway’ was to Portland.

It felt painful but also good and right to be there.

We didn’t expect the blizzard. Most of our plans were altered by it, but our friend had made me an appointment with an aesthetician she had praised and surprisingly, the spa was open and a short walk from our hotel. I went.

I was lying on the table, eyes shut, face wet from the steam, when the question finally came.

I froze. Then I think I said the word ‘I’ a couple of times.

She said something kind and neutral. It can be painful is what I think she said. Giving me an out.

But I managed to tell her. I forget what she said, exactly, but she said all the right things and asked if I wanted to talk about it, and I did. We talked about Caitlin and the woman’s beloved father, also gone to the other side. And it was okay. But.

I still don’t know how to answer this question. I’ll always be Caitlin’s mother but a yes answer leads to followup questions, and it doesn’t feel wise to put myself in the position of losing control or making strangers feel uncomfortable.

I also can’t say no.

It’s a dilemma, one I know that others have faced, but I don’t want to research or google ideas. And I’m not asking for advice. I’m just writing about the experience.

Caitlin had recently written something to me: “I have always felt that when it comes to decisions the only true and right ones are the ones you make completely for yourself. Not meaning that you don’t listen to others. But it has to come from a deep place of certainty and knowledge with all the evidence known within you for it to feel really right.”

I guess I will figure it out, Caitlin.

 

 

 


 

 

JANUARY 28– The Answer, from Caitlin

When Caitlin was a small, small person and had frequent hospitalizations and weeks of home courses of IVs and then a long, serious surgery at age 11, my mother would always marvel at her. “She’s so stoic,” she would say.

But it wasn’t like Caitlin didn’t have fears or anxiety. It was just that she pretty much kept all of that to herself.

Once, when she was about 3, I heard her in her bed talking to herself. “Always have to cough, don’t know why.”

And one day I found this little drawing:

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Like the frog in the slowly-boiling water, you get used to dealing with what you have to deal with, and it becomes the norm. I’ve been looking through old journals, and as I read through them, I kind of shudder. We always lived with held breath and a cracking heart. From the year she was 11 and spent months in the hospital, after surgery to remove part of her left lung:

I was just looking out the window and saw her clench her fists, then run up and down the yard. She’s trying to make herself better.

Last week, on Caitlin’s Boston bedside table, which was usually stuffed with toppling-over stacks of books, I was surprised to find only two items: one of Dr. Brian Weiss‘s soul/reincarnation books, and a little health journal she sporadically kept. In 2012, that year that I wrote was so great the other day, she had written:

Waiting on bloodwork and doctor’s call. Stressed. Scared. I don’t know if having another disease is something I can handle. So much time thinking about myself. Feel depleted. So much time just trying to care for myself that I have no energy left to really truly do something outside of me. Wish I could just forget about myself and throw myself into something meaningful but the mundane daily aspects of health keeps me tethered to my stupid problems.

Caitlin had cystic fibrosis, but by the end, she also had severe pulmonary hypertension, CFRD (diabetes), ocular migraines that put her at higher risk for stroke, blocked sinuses, and constant, painful total body aches that required round-the-clock doses of Tylenol. I’m sure I’m forgetting something, but the point is, all of these conditions required care. At her service in December, Andrew pointed out that every single day, Caitlin climbed a mountain. Every day involved so much more effort than any regular person can truly imagine.

This past week has been, for me, the hardest yet, the finality of her absence more fully real. It didn’t help that on Monday, I reached out to an MGH therapist who was supposedly outstanding—knew CF, transplant, ECMO, etc., someone who would understand the trauma of Caitlin’s life and last weeks without a lot of explaining by me. I waited for a reply, for a lifeline. On Tuesday, I received this email:

Thank you for your phone message. Unfortunately, I don’t have availability to see people for weekly therapy in my cystic fibrosis clinic at MGH given the limited time that I am there. Do you need to stay within your insurance network? If so, I can ask around in our department to see whether someone with experience dealing with illness and grief may have time.

We happened to be in Caitlin’s apartment  when I received that email and I was livid and hysterical and couldn’t stop sobbing all night long. All night I thought: in the morning I am going post this callous person’s name on my blog then march down to MGH and accost her, in person!

I obviously needed to unleash some anger.

I sent a restrained reply instead:

I left you a voice mail explaining that my daughter died after being on ECMO.
I am stunned by the lack of empathy in your response.

 

Then I let it go. I have to let a lot of things go. Caitlin would be the first to say so.

She was such wise counsel to so many of us. After my inward rant, in that little black health record, I also found this:

___________________

September 12, 2012

Feel desperately hopeful now that Obama will win. Biden’s speech tonight about his grandmother and courage.

Courage. That word means it all to me.

When I feel myself flailing, grasping, panicking with pain or hurt, I get a notion in my head, always, and remember that there is courage. Courage is the answer. Because courage doesn’t negate the problem, it exists within the problem. And when you realize the answer lies in taking in the problem and living in spite of it, with full awareness of it, you feel a new option and a new sense of hope and life.

JANUARY 24–The Price We Pay

We are home. We decided to fly out of San Francisco on Saturday. It was time; we need to get things done here. I was sorry to miss the marches, but as my good friend Ellen pointed out:

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I wasn’t sure I could go into the Boston apartment, never mind sleep there, but we did, and it was actually somewhat comforting. Also, by chance, my sister and brother-in-law were staying in Boston that night, and it was also comforting to spend time with them.

Random Thought: Barbecued Oysters

I really appreciated the notes from all of you who were grateful for the trip reports. It was  easier to grieve out there, close to that spectacular coastline and those ancient trees. Caitlin felt with us. Now, home, she feels very much absent again. We will work on that.

Our last day, Jess took us up to Point Reyes where we sat at picnic tables in the freezing cold and ate the most delicious barbecued oysters. If you’ve never had barbecued oysters,  you’ve got something to look forward to.

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Hog Island Oysters at Point Reyes

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Beautiful Jess

Random Thought: 2012

Five years ago it was 2012, and 2012 turns out to have been one of the most wonderful years of our lives. Viking was publishing Cascade. Nick and Caitlin and I took a relaxing winter trip that turned out to be one of our best. And that summer, after living alone in Paris for a little bit (a longtime dream), Caitlin met Andrew.

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Caitlin in Coral Gables, 2012

 

Yesterday, I found an old email I sent to my sister:

Caitlin really clicked with that boy. She said they talked instantly and forever, of ‘things’ and that he was very smart and kind. As she was telling me about him, she said “it’s like he was the male version of me,” and then her face went a bit white, and she said, ‘oh my god, that’s what the psychic told me. i would be the female version of this person i was going to meet.’

He felt the same. How lucky they both were.

Also, in 2012, Caitlin had been on a kind of wonder drug for a year. Kalydeco, invented by Vertex Pharmaceuticals, targets the specific genetic CF mutation that Caitlin had. Within hours of taking it for the first time in 2011, she felt better. She gained weight and had fewer lung infections. If Kalydeco had existed before her lung damage happened, it would have been as good as a cure. Although it ultimately came too late for her, she did enjoy a couple of relatively healthy, hospital-free years because of it, and enjoyed talking about her experience to a few groups, including Vertex and the Boston Business Journal. Drugs like this came about because of all the support for the Cystic Fibrosis Foundation, and we all thank you for that support.

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Caitlin interviewed by Boston Business Journal

Random Thought: Hereafter

Yesterday was the first day I spent alone in the house. Nick went back to work and kept himself busy. I managed to take a shower, but mainly I cried all morning. The news was all horrible and the day was gray and reminders of Caitlin were everywhere. There is a mountain of cards here and we are so incredibly grateful for them. I tried to read one or two but couldn’t manage any more, yet.

I finally decided to watch a movie that I love, “Hereafter.”

Hereafter came out in 2010 but didn’t do well, mainly I think because people went to it expecting a disaster movie–it opens with incredible special effects that depict the 2004 Indian Ocean tsunami. But it’s not about special effects! It’s an intelligent, engrossing, and very well-written movie that ruminates on whether there is an afterlife.

Matt Damon plays the part of a reluctant medium very very well.

After watching it again yesterday, I realized that it was written by Peter Morgan, writer of The Queen and The Crown. No wonder it’s so good, I thought.

In Pittsburgh, Caitlin and I loved to watch series-type shows after dinner. Our last show was The Crown, and we finished it right before she went into the hospital in November.

At the time, I looked up some of the actual events that took place in the show, including the Queen’s friendship with “Porchie,” and came upon this statement she made after his death:grief is the price we pay.png

She was, in turn, quoting from Dr Colin Murray Parkes, a hospice pioneer:

“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”

With this quote in mind, I want to point out that we are always going to want to talk about Caitlin, even if our voices crack and our eyes fill up. The pain of our grief was definitely worth the price of our love, and we’ll be paying for the rest of our lives. That’s okay.

With much love for all of you as well,

Maryanne

JANUARY 19–Words from Jess

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Jess wrote a post on her own blog today. It’s beautiful and here it is:

Castro avoided over 600 assassination attempts throughout his life, but even he couldn’t hide from 2016. 

2017 is the year of the Rooster and the year that a person who has never held public office is slated to become the 45th President of the United States of America. It was supposed to be the year that I traveled to Red Square with Caitlin. The year of Harry Potter lungs and silicone implants. The year that we emerged with our matching clamshell scars. But it’s not and it won’t be.

This is my first time writing in months. Usually it helps to express and manifest the inexpressible but, in this case, it wasn’t helping. I have tried to make sense of what happened, to play each and every scenario over in my head. Also, everything that I ever wrote, I always sent to Caitlin with the flagrant subject line “DRAFT” – and she would quickly respond with candid feedback. She was my editor. 

When I returned from India in the middle of December – from the cacophony of Jaipur and the undulating hills of Udaipur – I immediately flew to Pittsburgh. Caitlin had been on life support for a few days while she waited for lungs. I arrived in the city of bridges, home of the Steelers and quickly enmeshed myself into the daily routine. We – Maryanne, Nick, Andrew, & I – took shifts, ensuring that one of us was always by her side in the CTICU. We held her hands, we massaged her feet, and we read Mary Oliver passages aloud – a small act which seemed to perk up her waning blood pressure.

Last week, I had this terrible moment where a dear friend that I met while living in Kenya texted me after returning from several weeks in Cuba. She wrote, “Did Caitlin get her transplant?” I froze. I slowly typed,“Yes, she did” and then added “but she died” after that. So awful. Little things like that keep happening. I don’t want time to move on because I am so afraid of forgetting. The only image in my head is of Caitlin in the ICU and I am having such a hard time remembering anything before then. There is a dichotomy – as Caitlin’s situation has made me less afraid of dying because I know that she is there (wherever there is) paired with this unyielding desire to live, to really live – for her. 

I left Pittsburgh on the morning of December 20th. I had to fly back to San Francisco for chemo but I planned to be in California for just a day or so. I left UPMC – the hospital – and texted the other three, “I’m en route to the airport with Jim but I will see you all in a few days for five little pig Christmas. I’m just a phone call away if you need anything at all. Don’t let leather jacket man steal my chair-bed, keep writing in the chapel book, and keep the sails up…

Later that afternoon, Caitlin died. She was supposed to live. She should have lived. She should have had the chance to use her new, perfect lungs; to see her oxygen saturation at 100%. But she had to wait too long for her transplant, and her body had been through far more than any should endure. 

Below are the promises that I made to her when I spoke at her memorial service:  

  • I promise to do something extraordinary. I promise to make you proud and I promise to keep your light and your spirit alive.
  • I promise to do all that I can to fix the organ donation system
  • I promise to plant a garden that will mean for many what Prouty meant for you
  • I promise to smile at sad looking strangers and to address little pups in your Henry voice 
  • I promise to always be kind
  • I promise to learn more about astrology and its intricacies
  • I promise to trust my intuition; to listen to my own voice and to be in a state of non-resistance
  • I promise to take care of your Mom and Dad and Andrew
  • I promise to order Watermelon Sherbet in July
  • I promise to always say Rabbit Rabbit
  • I promise to do something – once a day – in your honor
  • I promise to advocate for those who are unable to advocate for themselves; to always be aware of the plights of others.
  • I promise to listen to Joni Mitchell and to text you when Losing My Religion just happens to play on the radio
  • I promise to finally see a movie by myself. A good movie. None of that junk.
  • I promise to keep wearing giant pearls and continue adding to our tribal wrist collection
  • I promise to find the magic; the unsung beauty.
  • I promise to attempt to write a Modern Love that tells the story of our friendship; our matching clam shell scars.
  • I promise to have a day where the only words that I speak are “can I have a water and a muffin?”
  • I promise to live; to really live; to stay away from the surface and to go deep; deep where the lobsters go.
  • I promise to keep having faith. Faith that there is beauty in this sometimes tragic life.
  • I promise to never take my lungs for granted. I promise to cherish each and every breath.

And so, 2017 will be the year of Caitlin O’Hara. My ruby slipper, my person, my heart.

 

 –Jess

JANUARY 17–In the Redwood Forest

Below is a screenshot of Caitlin’s Instagram from our trip home in September, 2015, when she got to visit the Prouty Garden one last time.  As I’ve mentioned, the current Children’s Hospital administration made their decision to cut down/kill the Prouty Garden’s 65 foot Dawn Redwood tree this past December, the same day Caitlin went on ECMO.

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The dawn redwood is in the middle rear of this pic

Today, in Caitlin’s honor, Nick and I visited the Muir redwood forest here in California.

The last movie that Caitlin saw was at the Carnegie Science Center a few months ago, the recent “National Parks Adventure” at the Omnimax. From CNN’s review of the film:
Two of the most integral figures in national park history are also honored in the film — conservationist John Muir and President Theodore Roosevelt, who convened in 1903 at Yosemite National Park. Their famous three-day camping summit under the stars in a giant grove of Sequoia trees is re-enacted by a pair of dedicated tribute actors.
“That meeting [between Roosevelt and Muir] is often regarded as the most important three days in conservation history, so we knew we had to include it,” says MacGillivray.

“They believed that nature was of spiritual value, and that you could get more out of it by not changing it. It was a unique point of view then — and one that people might take more for granted now.”

Like anything so natural and overwhelming to puny beings like us, photographs cannot do justice to how it feels to walk there among our earth’s tallest living things. But if you’ve never been, try to go in this lifetime. The forest is like a cathedral–hushed, and filled with shade and light.
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Nick and a redwood

At one point, Nick opened his knapsack and took out the photo of Caitlin that he’s been carrying on this trip.

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This is quite a large photograph but looks like a 3×5 against this tree.

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He also brought the religious gifts various people had given to Caitlin while she was sick and which hung on her IV poles in the hospital and during her surgeries.

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It’s 4 weeks today, exactly, and as I write that, it hits me all over again that it is true.

But Jess is here, and we love her. And we saw Kenley, too, last night. And read aloud a wonderful note we received from the kids’ former headmaster at Fay. And basically went on living, as impossible as that seems to be to do.

–M&N

JANUARY 16–Ropes Course for Souls

Big Sur. I had it in my head that we needed to get here.

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Fairy Ring of Coastal Redwoods

The glorious, big days are somewhat easy here. Night is still night, and nights are hard. At 2am the night before last, after getting a dozen messages from people telling me of signs they were sure they received from Caitlin’s soul, I thought, okay, I’m going to ask for a hard sign. I want a monarch butterfly to fly around me in a complete circle. Tomorrow.

And yesterday we went to Esalen for massages and to experience their famous hot sulphur springs.

Time has been a strange thing. Sitting in the hot water with the sea crashing below, all I could think was, Exactly four weeks ago today, Caitlin was in surgery and we were so relieved and happy. And now I am at Esalen, a place that seemed like Neverland.

Nick loved the energy at Esalen and afterward, went to look at the big farm garden there. I sat in an Adirondack chair overlooking the Pacific and I thought about the end of Mad Men and how I wanted Caitlin to see that I was there and a couple of monarch butterflies began flying all around… not right around my face, the way I’d envisioned, but in big swooping circles that took in much more than me.

A few people have said they enjoy reading Caitlin’s thoughts so here’s something relevant, as we all face the coming week.

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: October 2, 2016 at 10:31:46 PM EDT
To: andrew
Subject: Wow read this

https://www.washingtonpost.com/national/finally-someone-who-thinks-like-me/2016/10/01/c9b6f334-7f68-11e6-9070-5c4905bf40dc_story.html

With my big book, Sarum – that I’ve been reading that traces England from beginning of man to now — to this new book I’m reading – which does a similar thing with the slave trade and is already so so so good and opening up news ways of looking at slavery (for me) I just feel like plus alongside this election, which is challenging everything I took for granted ..::it’s an interesting and weird time to be alive and experiencing. I can’t help but imagine these times in the past that I read about, and then think how the time we live in now will just be something that happened to someone else, in the future….It will be this weird blip in history that is a forgone conclusion because it’s over, it’s sorted out. We learn about bad things that happened and somehow they don’t seem quite as unbelievable because the people in the future have figured out why it happens, and we know the ending.  I hope it doesn’t happen soon, but at some point the US will no longer be around, or it will be much different than it is now. And it won’t seem weird to people reading about it in history books. We will just seem like the dumb idiots of history who elected trump. Like the sheep in Germany who followed hitler. A question on a test somewhere. We parse the decades out and they all seem so different

– when I read Sarum I have a tendency to do a double take when things are different from say 1650 to 1690—when the area in the book has undergone a huge change. But of course in our modern history entire revolutions and wars happen in shorter times. Countries fall. We are all the same and we all have a collective fallibility and vulnerability. It can happen to any country and any place … but we also are all the same in that we never seem to really learn from history or believe WE are the ones making mistakes.

It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow. At least in the human form.

 

 

** The slave trade book was Homegoing, by Yaa Gyasi

Sarum is by Edward Rutherfurd

JANUARY 13–Glowing in the Dark with Mary

We have been here a week—feels like much, much longer. The rains kept us from going straight to Big Sur as we had planned, but that turned out to be a good thing. We were made to live inside the moments we found ourselves in. We did things we hadn’t planned to do: see Malibu and Beverly Hills and Santa Barbara and Miles-and-Jack country.

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..and just a flutter of, like a nutty Edam cheese

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Spirit Bear for Caitlin and for Gary Richardson

Strange, small-world, meaningful fact: our wonderful neighbors from Pittsburgh, Mary and Ralph, actually own a place just down the beach from where we stayed in Santa Monica. All this time, when they would go to CA, I thought they were somewhere else. (Never having been here, I didn’t have much of a map in my head.)

So we got to visit with them a bit. And that was surreal and healing and very, very good. They are kind friends who will always be in our lives.

Another Pittsburgh–now life–friend, the wonderful writer and soul, Jane McCafferty, has been so supportive with her words and thoughts and the other day wrote, “If you have a favorite saint, or a connection to Jesus, try calling on that now— in my experience this can be real medicine.”

I liked that advice and realized I’d already taken, like Caitlin, the stoic Mary as my own. At the last minute, I had packed the tiny glow-in-the-dark Vierge Marie that I purchased at Chartres when I visited there with Caitlin in 2004. After another 2am bad dream last night, I’ve decided I’m going to keep her glowing figure on my bedside table from now on.

I have a feeling that the real Mary would not have taken herself too seriously, and thus wouldn’t mind this version of herself.

Light inside darkness is always a good thing.

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La Vierge Marie

As soon as we arrived here last week, I realized I had to buy a stronger chain for Caitlin’s bird ring. I didn’t trust the one I had, but I did trust that I would find the right thing at some point, and as Nick and I were walking up the main street in Santa Barbara the other day, I glimpsed a store that looked to be full of necklace chains. Nick walked in and bee-lined straight to the perfect one. The right length, the right color. “Look up,” he said.

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I began to see her everywhere, of course. Even in the most unlikely places.

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And also in very likely, lovely places, like this stunning stucco church in Santa Barbara called Our Lady of Mount Carmel.

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St Francis and his birds and Mary

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Mary and 65 Roses

She is everywhere, once you know to look.

 

–M

 

PS:

Beautiful song sent by Jane.